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Posts Tagged ‘Autism Live’

by Shannon Penrod

Maybe it’s just me.  Maybe I’m crabbier than usual.  Maybe people are ruder. Or maybe my son has just improved to the point where it doesn’t occur to people that my son has Autism, but lately random people have been saying things to and about my son that just irk me. Image

First, it was the woman in a museum gift shop who sarcastically asked my son how old he was because we was playing with a toy that is meant for a much younger child. She then turned to me, rolled her eyes and said, “Really, Mom, how about some age appropriate toys?”  I didn’t snidely inform her that ages on toys are tied to development and all children do not develop at the same rate, nor should they be made to feel bad about that.  To be honest, I kind of froze.  I was so busy watching my son to see if he was going to get the sarcasm or understand what she was saying and be offended.

He didn’t, but it was because he and the nuerotypical friend he was with were having such a good time playing with the toys, they didn’t care. By the way, the nuerotypical boy, same age, didn’t pick up on the sarcasm either.   Still, I couldn’t just let it go, so when the boys were out of earshot I quietly took the woman’s supervisor aside and explained why she shouldn’t be making blanket assumptions about children’s abilities and interests. My comments were well received and I left feeling like the woman would be more aware before commenting again.

Then I went to see a new Dr. the other day.  I picked up my son from school and scurried him into the car to get there on time.  I checked his token economy chart to see that he had done a great job in school for the day.  His focus was great, he didn’t need prompting and he stayed on task all day.  It was time for him to get a break and a reward.  In the waiting room of the Drs. office I handed him my phone and told him he could have some uninterrupted game time.  He had earned it.  Then I grabbed a magazine for myself and in doing so the entire magazine rack came off the wall and spilled 3 magazines on the floor.  My son looked up and went right back to playing.  Along comes the nurse to help me pick up the magazines and she starts in on the full sarcasm assault of my son.   

“Way to be aware.”  She says to him. 

Oh man.  Really?  Because the irony here is that she is the one who is not being very aware.  Yes.  In an ideal world, my son would have jumped up and helped me.  And believe me there are times when he does.  But he’s just spent 6 and half hours being aware at school.  His brain is on a much-needed vacation.  And instead of giving him a clear direction and saying, “Gee, I’ll bet your mom would really appreciate some help!”  She decides to be passive aggressive and throw some sarcasm his way.  Now he’s supposed to stop doing the thing he finds rewarding, listen to her, detect sarcasm, take stock of his behavior, notice what he did wrong and then change it.  That’s a lot to ask of any 10-year-old boy playing a video game after a long day at school, but for one with ASD it’s the equivalent of climbing Mount Everest.  Both my son and I ignored her. 

In my head though I started the conversation where I would say to her: 

It’s possible that everything isn’t what you think it is.  Maybe the kid you think is rude has been fighting for two years to make eye contact with you, not because he wants to be able to make eye contact with you, but because he’s been told it’s important to you.

Maybe the child who is having a tantrum isn’t spoiled but has no other means of communicating their needs. 

Maybe that parent that you think hasn’t disciplined their child is exhausted from fighting to get their child life changing services. 

Maybe, just maybe, you don’t know everything about anything. 

Maybe you should think before you decide to speak.

Maybe you should take a stroll in a pair of shoes other than your own and open your eyes to the challenges that face many individuals.  

I wanted to say it, but I didn’t.

Perhaps what I should have said to her was what she said to my son. “Way to be aware!”

Shannon Penrod is the Host of Autism Live an interactive, online video podcast that provides news, resources and support for parents, practitioners and teachers working with children with ASD as well as individuals on the Autism Spectrum.  Her son was diagnosed with Autism at the age of 2. Visit www.autism-live.com to view the show and interact with Shannon and her guests.

 

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by Shannon Penrod

When A Child Dies From Autism…

Last week, on Mother’s Day, Mikaela Lynch’s parents experienced a nightmare that didn’t end.  Mikaela, a nine-year old with Autism, went missing.  For four days volunteers, family members and friends of the family searched for her.  During that Mikaela Lynchunbelievably difficult time, Mikaela’s parents would have been told that their child did not qualify for an “Amber Alert”, which would have mobilized more help and created more media coverage.  Amber Alerts can only be used when there is evidence that the child has been abducted. Children with Autism who are known to “elope” do not fit that criterion, despite the fact that they may be facing life threatening challenges.

The Lynch family was also subject to some negative media barbs wondering why they hadn’t watched their child more closely. As if you can ever watch a child with Autism who elopes closely enough…as if these poor parents could transcend the human necessity of blinking, getting a drink of water or simply looking away for a split second.

I wish there were a happy ending to this story, that Mikaela had been found alive and that her parents could have sighed with relief and held their child in their arms, smelled her hair and felt her breathe.  That isn’t the end to this story.  Mikaela’s body was found on Wednesday, in a nearby creek.  For the Lynch family all that is left is to mourn.  For the rest of us, we have the responsibility to learn from this tragedy and hopefully prevent the next one…because if we don’t, more children with Autism will die.

I know what you’re thinking.  Autism isn’t fatal.  Children don’t die of Autism.  I hear this a lot.  When someone tries to explain to me why there are more children affected with Autism than Cancer, AIDS and Juvenile Diabetes COMBINED but it still receives only a small percentage of the funding these other medical issues garner, this is often the excuse I hear.  “Autism can be devastating to a family, but let’s face it…it’s not fatal.”

Tell that to Mikaela Lynch’s parents.

This isn’t a question of bad parenting.  A recent study estimated that over 50% of children on the Autism Spectrum will at some time engage in something called “elopement.”  No, they aren’t talking about running off to Niagara Falls to get married.  They are talking about when a child runs or walks away without regard to safety or rules.  Every parent who has ever had a toddler knows what this looks like – the child just takes off.  It’s scary for any parent, at any age.  Imagine for a moment what it would be like if your child never grew out of that behavior? Imagine feeling as though you could never let your guard down, not now, not ever.  It is unimaginable, isn’t it?  For a parent with a child on the spectrum it can feel that way sometimes.

The horrible truth none of us likes to think about is that it is impossible to watch our children 24 hours a day, 7 days a week.  We can try, we can do our level best, but it is impossible.  Every year we hear about more children with Autism who go missing from their homes.  Some are found safe, many are not.  What follows is astonishing to me.  As in the case of the Lynch’s, the media and the public often point fingers at the parents.  If they knew their child was an eloper, why didn’t they keep them safe?  This is the rationale of someone who doesn’t want to face facts.  Until we make sure that all families facing these issues get help and support, we are ALL responsible.

The good news is there is support we can give families to help stop their children from eloping.  It takes time, and systems have to be put in place to keep the child safe while they are getting the proper intervention.  It takes money.  It takes trained specialists.  It isn’t something an exhausted parent can do by themselves.  We need to stop acting like they can.

If you or someone you know has a child who elopes, don’t wait and hope that it will get better.  There are organizations that can help you.    Call your local Autism Society and ask for help.  Contact a TACA parent mentor.  Apply for an emergency grant from Autism Care and Treatment Today!  Don’t wait.

If you are a grateful parent of a well child, and you are able to use your restroom, or step into the kitchen, or take a phone call without fear of losing your child forever, please, please, spread the word and support organizations such as the ones I listed above.

Lastly, send a loving thought to the Lynch family.  Their loss is immeasurable.

Shannon Penrod is the mother of a nine-year-old with Autism.  She hosts Autism Live, an interactive web show devoted to giving free information about resources and solutions in the Autism Community.  Ms. Penrod makes the choice in her writings to capitalize the “A” in Autism, despite the fact that it is not grammatically correct.  In her words, “Trust me, when someone tells you that your kid has Autism…it’s a capital A.”

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